"I've got a piece coming out for Buzzfeed about the word mulatto. I think that's a good word to start using more often. People don't like the word, but they can't point to why, or they think it's a reference to a mule. But the word is actually an Arabic word referencing people of mixed heritage. It predates the word for mule. Historically, it's the word we used for people of mixed race in this country. And the thing about words like mixed and biracial is that they're completely vague. They don't make much sense. Most black and white people who consider themselves biracial, their race is listed legally and socially as black. Plus bi- doesn't work because there are other races mixed in there, too. Part of the thing that worries me about the biracial movement is that it can be ahistoric. And as I said the vast majority of African-Americans are of mixed racial descent. So by the definitions they're using, every African-American is pretty much biracial. It would be a miracle if they did a test and there weren't some European poking in. In my view, mulatto acknowledges that there's a larger history. And for me, the black and white mixed experience is part of my African-American experience. I still consider myself African-American, just mixed African-American. It's like, if you have a Dad whose Irish, you'd be Irish, and nobody would debate that just because your Mom was Italian. But for African-Americans, we have these rigid ways of looking at the issue. We've inherited these preconceived notions." -Mat Johnson

Sickle cell anemia was first described in 1910 and was quickly labeled a “black” disease. At a time when many people were preoccupied with an imagined racial hierarchy, with whites on top, the disease was cited as evidence that people of African descent were inferior. But what of white people who presented with sickle cell anemia?

Doctors twisted themselves into knots trying to explain those cases away. White sickle cell patients must have mixed backgrounds, they contended — a black forebear they didn’t know about perhaps, or one they didn’t want to mention. Or maybe white patients’ symptoms didn’t stem from sickle cell anemia at all, but some other affliction. The bottom line was, the disease was “black,” so by definition white people couldn’t get it.

Today, scientists understand the sickle cell trait as an adaptation to malaria, not evidence of inferiority. One copy of the sickle cell trait protects against malaria. Having two can cause severe anemia and even death. Scientists also know that the trait is common outside Africa across the “malaria belt” — the Arabian Peninsula, India and parts of the Mediterranean Basin. And people historically considered white can, in fact, carry it. In the Greek town of Orchomenos, for example, the gene is more prevalent than it is among African-Americans.

We know all this, and yet the racialization of the disease, the idea that it occurs only in people of sub-Saharan African descent, persists. “When I talk to medical students, I get this all the time — ‘Sickle cell is a black trait,’ ” Michael Yudell, chairman of the department of community health and prevention at the Dornsife School of Public Health at Drexel University, told me.

That’s worrisome for many reasons, he says, chief among them that it may result in subpar medical care for some patients. Case in point: California’s universal blood disorder screening program has identified thousands of nonblack children with the sickle cell trait and scores with the disease — patients who, had doctors stuck to received “wisdom,” might have been missed.

Professor Yudell belongs to a growing chorus of scholars and researchers who argue that in science at least, we need to push past the race concept and, where possible, scrap it entirely. Professor Yudell and others contend that instead of talking about race, we should talk about ancestry (which, unlike “race,” refers to one’s genetic heritage, not innate qualities); or the specific gene variants that, like the sickle cell trait, affect disease risk; or environmental factors like poverty or diet that affect some groups more than others…

In 2001, Cândida and Altair, a married couple, started a national organization to increase the rights of sickle cell patients, and thereby gave birth to the sickle cell disease (SCD) movement in Salvador, Bahia, Brazil. Cândida, the wife, who carries sickle cell trait, now heads the municipal SCD unit for Salvador. She, with light skin and wavy brown hair, might be considered white in the United States, but when I asked her why she had created the organization she responded: “Eu sou negra!” (I am black). Her darker-skinned husband, who considers himself a black activist, coordinates the national SCD association and helped craft policy for SCD. As a family, Cândida and Altair shift between multiple roles: genetic carrier, parent, government official, and SCD advocate. Together these two activists have helped shape the racial discourse on SCD by associating the disease with “blackness” on the individual, organizational, and national level.

Sickle cell disease is the most common hereditary hematologic disorder in Brazil and throughout the world. In Brazil, the estimated prevalence is between 2% and 8% of the population. My research explores how patients, non-governmental organizations, and the Brazilian government, at state and federal levels, have contributed to the discourse of SCD as a “black” disease, despite a prevailing cultural ideology of racial mixture. Specifically, this project analyzes how the Brazilian state, advocacy, and patient communities within the nation have, at times, branded SCD an Afro-Brazilian disease. At the state level, I’ll describe the reigning racial ideology and how the development of racialized health policy contests their own viewpoint. On the organizational level, I’ll investigate the alignment of the SCD movement with the black movement of Brazil and the decisions made by some of these organizations to influence health policy using anti-racist motives. Lastly, I will explore the actual embodiment of SCD in the patient population and the “identity crisis” many may experience upon being diagnosed with a “black” disease.

With this framework in mind, I aim to answer the question—How are different actors (re)defining race and health through culture, biology, policy and politics in contemporary Brazil? This multi-level identity crisis is in constant contestation of competing racial frameworks at the micro, meso, and macro level. I will manage these complexities with a flexible notion of biological citizenship that considers frameworks of biology, social determinants, and policy in ways that is uniquely responsive to the cultural and historical specifics of how race, identity, health, and legitimacy operate in Brazil.

To do this, I will spend ten months in Brasília, Salvador, and Rio de Janeiro investigating the construction of sickle cell disease on three different levels: advocacy organization around patient rights, individual patient and family experience, and governmental policy development and implementation. To assess the social, geographical, and political context of my subjects, I will use a series of historical and qualitative methodologies.

My work will deepen and re-think narratives of Brazil’s racial history through the lens of SCD. It also stands to generate a better understanding of the historical genealogy as it informs the current implementation of SCD policy. This analysis can provide lessons to both Brazil and the US on how future policy can be designed. Specifically, whether policy developed around populations (or sub-set of populations) can be measured against and be as effective as policy developed around disease.

Juliana Manzoni Cavalcanti, PhD candidate
Graduate Program on History of the Sciences and HealthCasa de Oswaldo Cruz/Fundação Oswaldo Cruz

Marcos Chor Maio, Senior Researcher and Professor
Graduate Program on History of the Sciences and HealthFiocruz – Casa de Oswaldo Cruz

Translated by Diane Grosklaus Whitty

The article examines medical and scientific studies of sickle cell anemiapublished in Brazil in the 1930s and 1940s, when the vast majority of physicians and scientists believed that miscegenation played a significant role in the epidemiology of the disease in the country. Special focus is placed on hematologist Ernani Martins da Silva, of the Oswaldo Cruz Institute, who conducted blood analyses around the interior of Brazil with the purpose of classifying miscegenated and allegedly pure population groups based on the presence of sickle cells and the racial distribution of blood groups. The article explores the ambivalences stemming from associations between sickle cell anemia and the ‘black race’ during this period.

The term sickle cell disease (SCD) is applied to disorders caused by a specific change in the hemoglobin molecule, an oxygen-carrying molecule that is one of the most abundant within red blood cells. Genetic alteration causes one amino acid to be replaced with another in the protein chains that make up hemoglobin (with ß6 glutamic acid replaced by valine – Hb S), thereby altering the molecule’s structure. This change lowers the affinity between the oxygen molecule and hemoglobin, prompting the formation of long hemoglobin chains that clump into intracellular bundles concentrated at the ends of the red blood cell and thus distort the cell into the crescent shape from which it gains its name (Andreoli et al., 1997, p.371)…